B12 very low

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I was recently told I had vitamin B12 deficiency. My doctor ran bloods again to double check and also requested tests for Pernicious anemia and celiac disease, both were negative. I asked what my b12 level was and he said zero. He said it was so negligible it didn't register a number.

He said that because the tests for PA and celiac came back negative that it was due to dietary reasons. I am not vegan or vegetarian and eat a varied diet so I'm sceptical that it's because of diet. He's given me 150mcg of cynocolbalmin tablets to take daily for the next 6 months and then have bloods redone to check levels.

I just wondered if anyone had any opinions on whether that sounds like the best course of action? From what I've read, with very low levels, people generally get injections to get their levels back up.

Advice appreciated 🙂

2 likes, 9 replies

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9 Replies

  • Posted

    tablets to not  get into the cells where its needed, celiac is not 100% accurate test, plus you can have low 12  def, without having PA , it you take the tablets it will give a false b12 reading with your next blood test
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  • Posted

    Thanks for the responses. I went for a second opinion after posting and my bloods were re taken. Turns out my Level is 157. Low, but obviously not zero!! Turns out my GP hadn't realised that the original test had been degraded and therefore gave off a result of zero.

    An unnecessary worry for a while but at least now I have an accurate test result to work from.

    Thanks

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    • Posted

      Hi all

      My b 12 is 76 and ferratin level is 16.6 and vit d is 15. I am dizzy and weak all the time. Chest pains and palpitation u feel like I might faint.

      Is it common in these situations. Plz reply

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    • Posted

      I am not surprised that you feel  how you do but what does worry me is if these results are known to your doctor why you are not being treated by him/her?

      It would help if you could quote the ranges (from low - to high) of the three you mention - Vitamin B12, Ferratin and Vitamin D as different laboratories use different reference ranges.

      Do you happen to know your Folate level?

      I am not a medically qualified person but on the face of things your symptoms could well be explained by a Vitamin B12 Deficency and they are possibly made worse by low Vitamin D and iron.

      You really should make a list of your symptoms, see your doctor and ask for treatment in accordfance with the BNF Guidelines which I quote below:

      Treatment of cobalamin deficiency

      "Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF, 

      Standard initial therapy for patients without neurological involvement is 1000 µg intramuscularly (i.m.) three times a week for two weeks. 

      The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 µg i.m. on alternative days until there is no further improvement.

      However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment"It would also be interesting to know why you are possibly B12 Deficient, for instance, your age, *over 60)

      are you vegan or vegetarian,

      have you had gastric surgery,

      are you on medication such as Metformin (for diabetes)

      Proton Pump Inhibitors (for reflux)

      Antacids,

      Antibiotics,

      the Contraceptive Pill etc.?

      Have you recently had surgery or dental treatment using nitrous oxide? Do you have a close family member with Pernicious Anaemia (P.A)

      Do you have thyroid problems?

      Crohn’s disease,

      irritable bowel syndrome,

      gluten enteropathy (celiac disease?

      Do you have a problem with alcohol?

      These are just some of the causes of B12 Deficiency and if you can "see yourself" affected by any of them add them to the list of symptoms to show your doctor.

      I WISH YOU WELL

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    • Posted

      Hi thanks for the reply

      I had fever for almost 25days was on antibiotics then. Now no fever but I am very very weak and dizzy all the time.

      Vit b12 range is 200-1100 mine is 76

      Vit d is 30 -50 mine is 15

      Ferratin 30-150 mine is 15.5

      I am taking vit b12 shots every alternative day.

      Weekly once d rise.

      Also taking 5ml of iron supplements morning and night

      With 1supradyn multivitamin tablets.

      Yes I am a vegan.

      I used Sompraz L proton pump inhibitor for many days to treat gastritis

      I don't have a good doctor here so I am concerned

      It's been a month and I see no change. So I am very worried

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    • Posted

      If you continue to be vegan then you will probably need B12 injections for the rest of your life.

      You hadn't mentioned the fact that you were already on the alternate day loading doses.

      The only natural way to get Vitamin B12 is from red meats, fish, poultry, eggs and dairy produce which presumably you don't eat.

      This is probably the underlying cause of your B12 Deficiency which was exacerbated and made worse by the 25 days of antibiotics and the PIP for gastritis.

      The good news is that it is not uncommon for your symptoms to appear to get worse before they get better once you start the B12 injections and it starts to repair the damage done to your nervous system.

      I suggest you make a list of all your symptoms and every day score them between one and ten how bad they are that day so that as the days go by you will see the improvements.

      It is still "early days" yet on your road to recovery and my advice is to not worry too much about the slow progress as worry and stress simply uses up B12 needlessly.  A lot will depend on how long you have been deficient - you don't give your age or how long you have been Vegan.

      Presumably you eat a lot of green vegetables like broccoli, sprouts, beans, asparagus etc all foods with high Folate in them. The reason I asked whether you know your Folate  level is because this is essential to process the B12 you are having injected and will be "used up".

      As I've said, I'm not a medically qualified person but one who has needed to have B12 injections for 45 years due to Pernicious Anaemia which is another form of B12 Deficiency.

      You say you don't have a good doctor, well at least he or she has started you on the right treatment.  If at the end of your course of alternate day injections you are still suffering severe symptoms you must insist on them continuing until there is no further improvement as I highlighted in my previous answer.  You should also make it clear that you are Vegan and for this you will then probably be put on a 12 week schedule of B12 injections.

      Please stop worrying, start your symptoms chart and learn to be a patient patient.

      "clivealive" at the age of 75.

      I wish you well

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    • Posted

      Yes

      I am a vegan by birth. Sure will make list of symptoms and rate them. Yes I am taking green leafy vegetables. Dates pomegranate and beets. Thanks a lot for ur suggestion and concern.

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    • Posted

      We are born with several years worth of B12 in our liver which is released and used and this is normally replenished through a meat eating diet.

      If your Mum was Vegan too you may well have started out with less than the norm unless she was aware and supplemented her diet with B12 some other way.

      It may be that with your past tummy troubles you may not be able to absorb Vitamin B12 orally so if when your current course of injections finishes, unless your doctor precribes them every 12 weeks from then on you will need to point out that tablets may not be any good. It would also be a good idea to have your Folate level checked just to be sure.

      Ironically there is just one other way to get B12 naturally and that is to be not too fastidious when washing your vegetables as it can sometimes be found in the soil - but you won't want to know how it gets there.... redface

      It probably gives truth to the old saying "Eat a peck of dirt before you die"

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